This post has been a long time coming. Most of you who read this blog have heard this in bits and pieces, but here’s the whole story of where we are right now with Colin’s ears and how we got here.
Colin and J.J. had their newborn hearing screens at the Texas Children’s Pavilion for Women NICU. J.J. passed. Colin passed in his left ear, but failed in his right ear. Protocol for the failed test in one ear dictated that he next get an ABR on both of his ears. This more sophisticated test measures brain stem response to sound. After this test we received a call telling us the audiologist wanted to speak with us the next morning in the boys' NICU room.
It can’t be that bad, we reasoned, because we know he can hear in one of his ears. I saw that green word “PASS” flash up on the screen with my own two eyes during his initial hearing screen.
Here’s what an ABR looks like. This is actually J.J., but you get the idea. (Why did J.J. get an ABR even though he passed his newborn hearing screen, you ask? When one baby fails a hearing test, doctors like to double check those with whom they share identical DNA. He passed).
The next morning one of the TCH audiologists gave us the news. "Colin has a profound sensorineural hearing loss in both of his ears." “Both?” we asked. “How can that be? He passed the newborn screen in his left ear.” “Sometimes the initial screen is not entirely accurate. That’s why anytime there is a failure in either ear, we do the ABR on both ears as a follow up.” “Okay….So…he’s deaf? Is that what you’re saying?” “Yes, that’s what I’m saying."
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We knew Colin was going to have some challenges. Knowing everything he endured in utero and then immediately after his birth at 2 lbs 11 oz, it could be no other way. Deafness, to me, seemed, and still seems, a totally manageable challenge. Far more dire problems seemed likely. “He’s going to hear,” I told Brian. “He just will. I know it."
I could say that with such confidence because I vividly remembered hearing a speech at a charity event given by a profoundly deaf teenaged girl. She was more articulate than me and heard just fine. The charity event was for The Center for Hearing and Speech, which was our first visit after Colin was discharged from the NICU.
There we learned about cochlear implants and began Colin’s journey towards full access to sound. Here are the steps Colin has taken so far in that journey.
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Step 1: Hearing Aids
The importance of early diagnosis of hearing problems cannot be overstated. Because Colin was diagnosed at less than two months old, even before his official due date, he is perfectly positioned to overcome the challenges of being deaf. It takes hearing babies almost a full year of hearing and processing sounds before they begin to speak understandable words. So every day that went by in which Colin wasn’t hearing anything, he was getting farther behind in his eventual ability to speak. Audiologists are in agreement: the quicker we fit him with amplification devices, otherwise known as hearing aids, the better. So that’s what we did.
Portrait of a concerned dad
Colin did great.
Tah dah! With a little toupee tape, the hearing aids stayed on his tiny head.
As a bonus bit of parenting, on that same exact day, Amanda was doing flips on some strange playground apparatus and fell flat on her face. So we got an emergency call from the school nurse and an emergency trip to the dentist.
That 24 hour period was an adult dose of parenting. So when the day was finally over, we cuddled.
And the next day I found this next picture on my phone. Somewhere in the chaos Elizabeth had managed to take a picture of my butt.
Step 2: Speech Therapy
Two month old babies can have speech therapy? Why yes! They can! Colin goes to speech therapy at the Center for Hearing and Speech every other week. He sits in a very quiet room and listens to interesting sounds and learns to pay attention to them. His speech therapist likes to joke that she went to graduate school to learn how to play with toys, but she is actually a miracle worker. She teaches Brian and me how to play with Colin at home to work on his hearing. Here are some examples of exercises she has taught us. We hold a toy out of Colin’s eyesight. Then make a noise associated with the toy, and when he turns his head toward the sound, show him the toy. We are teaching him to turn his head to sound, to understand that sounds mean something, and to concentrate on associating the sound with the meaning. And if he verbalizes to the toy, give him tons of positive reinforcement. But to the untrained eye it just looks like play. Also these videos make it very obvious that one of these babies hears better than the other. You can see that by how quickly J.J. turns his head. He’s our own personal, adorable control group.
Step 3: MRI
Hearing Aids alone very rarely, if ever, provide people with a profound hearing loss like Colin’s access to enough sound to speak even remotely clearly. Cochlear implants, in contrast, do provide that access. In very rough terms, a cochlear implant receives acoustical sound through a microphone, changes that sound into an electrical impulse, stimulates the auditory nerve, which transmits that electrical impulse to the brain, which can understand that impulse as sound. That description probably reads like nails on a chalkboard to trained audiologists and ENTs, but it’s the best I can do.
Cochlear implants will not help those who do not have an auditory nerve, however. Because we know Colin is hearing at least a little bit out of his left ear, we think it highly unlikely that he does not have at least one auditory nerve. But there’s only one way to find out for sure, and that’s with an MRI.
Colin had his MRI a couple of weeks ago. Because he is a baby and can’t hold still on his own, we had to put him under general anesthesia for the test. We were very nervous about our little guy going under general anesthesia, but he did great.
Here he is at the hospital bright and early in the morning.
And inhaling the anesthesia
Waking up hungry and angry.
Heading home. Total champ.
A few days later we discussed the results with his ENT. Colin’s anatomy “looks good for implantation,” meaning his cochleas look normal and he has two good looking auditory nerves.
"Then why can’t he hear?" you may be asking. We still don’t know, and likely never will. The anatomy of most deaf babies’ ears do not provide the answer to this question. We will do some genetic testing to see if that tells us why, but the odds of that providing the answer are very slim, given that his genetically identical brother hears just fine.
Step 4: Booth Testing
The next step in this process is making sure that Colin truly needs the cochlear implants. The procedure is not without its drawbacks, the main one being this: his hearing will become totally dependent on the device being implanted in his inner ear, and he will no longer be able to hear acoustically. So we have to be absolutely certain that the access to sound his ears currently provide is not going to be enough for him to hear and speak.
Brian and I initially thought, ok, just do an ABR with the hearing aids on, and that will tell us. But we were wrong, you can’t do an ABR with hearing aids on. Instead you do what is called booth testing. Colin will be put in a sound booth, and noises will be piped in through a set of speakers. He will react, or not react, to the sounds, and trained audiologists will tell us how much he heard and how much he didn’t hear. We will do Colin’s first booth test during the second week of October. We have been working diligently at getting him to turn his head and react visibly when he hears things, so I am confident that the booth test will give us reliable data.
Colin’s sisters have been his biggest supporters during this journey. I took the girls out for Mexican food while Colin was still in the NICU to break the news that one of their baby brothers couldn’t hear. Their very first question was, “How can we help him?” “Right now you can pray for him,” I said. “But when he comes home you’ll be able to talk to him. Talking to him and playing with him is the very best way to help him.” They have done all that and more. Here is probably my favorite video so far.
This boy is so loved.
